Diabetes in Pregnancy Network: Scoping survey March 2013

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Phoebe Allison
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1 Diabetes in Pregnancy Network: Scoping survey March 2013

2 Diabetes in Pregnancy Network Scoping Survey Aim To inform the development of a National Diabetes in Pregnancy Network Objectives To identify the challenges faced by maternity teams To establish ideas for what a diabetes in pregnancy network could do to help improve services, patient experience and pregnancy outcomes for women with diabetes Method Online survey link sent to potential members of the network via a Diabetes in Pregnancy e-bulletin

3 Who responded to the survey? 65 people completed the survey Geographical representation of responses Profession of respondents

4 What are the biggest challenges in delivering care for women with diabetes who are pregnant, or planning to get pregnant?

5 Thematic Analysis 35 respondents (65 challenges) Increasing numbers of gestational diabetes (GDM) and type 2 diabetes with no extra capacity 19 Improving pre-pregnancy care and early referral in primary care 13 Encouraging women to come for pre-conception care 13 Delivering pre-pregnancy care for women with type 2 diabetes 5 Education of healthcare professionals to a safe standard 4 Managing high HbA1c 3 Safe management of antenatal corticosteroids 2 Cultural barriers to women accessing the service 2 Delivering pre-pregnancy care for women with type 1 diabetes 1 Lack of systematic retinal screening 1 Support for the Diabetes Specialist Midwife role 1 Meeting GDM guidelines 1

6 High demand for services Growing population of women with pre-gestational and gestational diabetes Rising prevalence of pre-gestational (particularly type 2) and gestational diabetes expected to continue No extra capacity or increase in staffing hours to compensate for extra demand in services creating workload pressures Increased clinic sizes creating long waiting times for appointments

7 Knowledge of diabetes in pregnancy Poor knowledge of diabetes in pregnancy amongst health care professionals in primary care (GPs, practice nurses) and secondary care (obstetricians and midwives) leading to inadequate care Educating HCP and women with diabetes about safe weight during pregnancy and appropriate glycaemic control at onset of pregnancy

8 Preconception care Lack of, or inadequate, timely preconception counselling in primary care Late referrals from primary care to specialist services Lack of awareness and poor uptake of preconception clinics amongst women with diabetes Accessing and engaging women with type 2 diabetes Targeting hard to reach groups

9 Commissioning, organisation and delivery of care Commissioning diabetes services within antenatal contracts Ensuing good quality care for women who are managed in primary care including appropriate and timely referral to the pregnancy diabetes team Fragmented care for women with diet controlled GDM Establishing links with primary and community care to impact on pregnancy preparation Lack of national guidance for GDM diagnosis Lack of, and unawareness of need for systematic retinal screening during pregnancy Multi-cultural barriers

10 What could a diabetes in pregnancy network do to help improve services?

11 Thematic Analysis 33 respondents (49 suggestions) Share best practice 10 Educate primary care 7 Provide networking opportunities to learn from others 5 Encourage audit participation/benchmarking 4 Make pre-conception care a QOF target 4 Influence commissioners 3 Consensus statement on GDM diagnosis 2 Educate midwives 2 Guidelines for care 2 Raise profile of pre-pregnancy care 2 Develop e-learning module 1 Guidelines for pump therapy in pregancy 1 Highlight need for retinal screening 1 Promote role of DSM dual trained 1 Raise awareness of increasing GDM burden 1 Raise profile of dietitians 1 Regular updates 1 Set minimum staffing levels 1

12 Provide networking opportunities to share learning Sharing examples of initiatives that work well/good practice Sharing information and resources Exchanging ideas Alerting members to updates in evidence-based practice Communicating on a national basis to help develop consistency Encourage audit participation to benchmark services

13 Improve service provision in primary care Develop education materials for primary care Lobby for diabetes in pregnancy and pre-conception counselling to be a QOF target to incentivise GPs Influence commissioners to recognise the growing burden of diabetes in pregnancy

14 What could a diabetes in pregnancy network do to help improve patient experience and pregnancy outcomes?

15 Thematic Analysis 31 respondents (52 suggestions) Campaign to raise profile of diabetes and pregnancy 11 On-line education materials for women 10 National standards for care 9 Promote good practice 5 Pre-conception education materials 4 Influence commissioners to increase funding 2 Information in other languages 2 Link with Royal College of Midwives (RCM) to improve midwife education 2 Multidisciplinary team education 2 Advocate self-referral for pre-conception care 1 Critical analysis of metformin in pregnancy 1 Local to regional links 1 Online forum for women with diabetes in pregnancy 1 Standardise diagnostic criteria for GDM 1

16 Raise awareness of diabetes in pregnancy nationally and locally Raise the profile of pre-pregnancy diabetes care and pregnancy planning Highlight the increasing numbers of women with GDM and the lack of resources and staff to manage these women Promote the need for primary care and commissioning groups to actively engage in helping women with diabetes of childbearing age receive appropriate preconception advice and care Raise the profile and importance of the different MDT roles involved in patient care including dietitians and diabetes specialist midwives

17 Raise awareness and improve knowledge of diabetes in pregnancy amongst service users and the general public Encourage greater public awareness of the risks of obesity in pregnancy Raise awareness of availability of preconception care to service users Improve and standardise information for women Develop and provide multi-lingual patient information leaflets on different aspects of diabetes in pregnancy Create an online repository for up to date patient information Establish a forum for women with diabetes in pregnancy to exchange concerns Advocate self referral for preconception care

18 How could awareness of diabetes in pregnancy be raised? Lobby for proper care planning approach which incorporates pregnancy planning Influence diabetes in pregnancy/preconception care as a QOF target National campaigns Media campaigns Establish better links with neighbouring local and regional centres Involve women with diabetes in planning services Work alongside surgery clinics to educate staff and consult with women with type 1 and type 2 diabetes Set standards for written information and key messages so consistent advice is given

19 Workforce Set national workforce standards including: who should be involved the role of the DSNs and diabetes midwife within the service (variation within regions reportedly exist) minimum staffing levels communication skills/competencies

20 Education of healthcare professionals Agree regional educational programmes Develop an e-learning module for non-diabetes specialist health professionals Symposium days for midwives Establish links with the Royal College of Midwifery to increase diabetes education for midwives Communicate the importance of diabetes in pregnancy to Heads of Midwifery/Midwifery managers to ensure staff are released from clinical duties to attend education sessions

21 Guidelines and standards Consensus for GTT diagnosis Standardise diagnostic criteria for GDM Develop and/or improve national guidance and standards Establish guidelines for management of pump therapy in pregnancy

22 Regional Network Meetings Two regional network meetings were held in: East of England (28 th November 2012) Yorkshire and Humberside (5 th February 2013) Delegates at these meetings were asked to consider: Where do you want the network to be in 12 months? What are the key priorities? How can we move forward?

23 Where do you want the network to be in 12 months? Holding regular meetings (two per year) Developing standardised guidelines Hosting E-forums Participating in the National Pregnancy in Diabetes (NPID) audit Having CCG and primary care representation on the network Developing sub-groups by specialty Influencing commissioners Regularly receiving update s Sharing good practice Sorted in order of priority

24 What are the key priorities? Standardised guidelines and protocols Funding issues / engaging with commissioners Preconception care Audit Defining the diabetes in pregnancy MDT Developing links with primary care Benchmarking to improve standards Co-ordinating projects Dealing with increasing numbers Educating wider team Gestational diabetes Improving quality of care Shared learning Sorted in order of priority

25 How can we move forward? Engage with commissioners Participate in the National Pregnancy in Diabetes (NPID) audit Develop working groups to more ideas forward Ensure network continues and actively participate Commissioning toolkit / online forum Health needs analysis Network meetings Address capacity / funding issues Develop a website resource Education of HCPs Identify gaps in DSM services Improve links with primary care More obstetric input Share teaching material Sorted in order of priority

Cumbria Diabetes Dr Cathy Hay Clinical Director Cumbria Diabetes Cumbria Partnership NHS Foundation Trust

Cumbria Diabetes Dr Cathy Hay Clinical Director Cumbria Diabetes Cumbria Partnership NHS Foundation Trust Cumbria Diabetes 2011 Dr Cathy Hay Clinical Director Cumbria Diabetes Cumbria Partnership NHS Foundation Trust Forecasted Numbers for Diabetes in Cumbria 2005 2025 (Source: PBS Prevalence Model) 45,000